| Diagnosis: | Paraganglioma in my abdomen |
| Approx date of diagnosis: | 22/06/2022 |
| Length of time it took to be diagnosed: | Incidental finding |
My name is Michele and I am a 49 year old living in WA.
One Friday afternoon after picking my son up from work I was experiencing bad abdominal pain so I was resting in my bed. Mum came over and was talking to me about going for a drive with my dad the next day so she didn’t have to go for a drive in the country to pick up yet another car for him to fix up when she questioned why I was in bed at 5 in the evening. When I told her I had pain in my side she made me ring Dial a Doctor , which resulted in a trip to the ED for a gangrenous appendix. My then 20 year old son was with me in the ED when the resident came in with the CT scan results, my appendix needed to come out and they had also found an 8cm mass in my abdomen.
I was in shock my son who had driven me to hospital was next to me crying and I was too stunned to know what to do to make it right for him. That night up on the ward I was of course on my phone playing Dr Google trying to work out what it could be which of course gave me all the wrong answers none of them good.
I was referred to Sir Charles Gardiner where I was looked after by a general surgeon and his team. I had an excellent nurse manager that is worth her weight in gold who organised for me to have every test under the sun in preparation for surgery to remove whatever this mass on my inferior vena cava (IVC) was. After the biopsy when they discovered it was in fact a paraganglioma the head of Endocrinology jumped on board as well. I had a vascular surgeon from Hollywood Hospital on the team and they would have a meeting every Wednesday morning, after which Christine would call me and keep me updated.
From the time it was discovered and I was referred to the general surgery team I had CT, PETs, MRIs, colonoscopy, heart monitors I can’t even remember them all, there was a different appointment or procedure every few days for weeks leading up to the surgery to make sure every part of my body they knew inside and out. It was such a whirlwind I don’t think I ever really stopped to let myself think.
The morning it was diagnosed as a paraganglioma I was at work and I had a flood of phone calls from the team. Paras can release catecholamines, surgery got put back a few weeks so I could take medication to drop my blood pressure very low. I was testing my blood pressure three times a day standing and resting and sending it through to the endocrinology team to monitor.
My appointment with the vascular surgeon outlined exactly what they would do to remove this tumour. It was overwhelming and I went in under prepared. He explained that they would put my heart on bypass while they performed the surgery, blood would be pumped through my neck and groin, I could lose a kidney, I think I didn’t retain the rest of the information, because when it came to surgery and they marked a spot on my abdomen I asked what it was for and they explained that it was in case I had to have a Stoma, I told them in no uncertain terms I would never have a stoma and they better make sure I didn’t have one.
My last general surgeon appointment told me to prepare a health and wealth plan. To this day I still have not done this. I told him he will have to work his magic so I didn’t need one.
My surgery was a success. It went for 10 hours, they had previously predicted it could take up to 15 hours. I was in the ICU for 2 days then I was on ward for nearly 3 weeks. I went back to work on a part time basis after 6 weeks. In hindsight I should have given myself longer to heal.
Prior to the surgery I did not even have a regular GP. I had weight loss and high blood pressure that was put down to stress of separation. I had flushing that was put down to pre menopause symptoms.
Post surgery I went to a local GP who had never heard of a paraganglioma. Nobody could tell me how long it would take for my body to heal so I went off my own reckoning that a Caesarian takes 6 weeks so I should be right in 6 weeks not that I had a laparotomy and that my body needed longer to heal.
I had the genetic testing and my tumour is not genetic which I was thankful I had not passed it on to my children. I had 4 monthly CTs for the first year then a PET scan CT scan and blood testing after a year which are all clear.
At the time of my surgery I thought I was the healthiest I had ever been I was working out regularly at the gym, not drinking alcohol eating super healthy, this was good preparation for the enormous surgery my body had to endure and I am thankful I was in peak physical condition with the exception of a 8cm tumour hidden in my abdomen.
I am now questioning some more life choices, I have started studying Social Work while working full time and instead of gym workouts I have traded for more gentle exercise options. I have recently been talking to my friend who is currently getting prepared for surgery for cancer and I have realised I need to be kind to myself and give not just my body time to heal, but let my mind have time to heal and process the trauma of what happened as well.
